Category Archives: Care Politics

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At long last, on Wednesday 17 July, after many years and countless delays, the Bill to put in place a modern legal framework for people with impaired capacity in Ireland was published. When enacted, the Assisted Decision-Making (Capacity) Bill will replace the Lunacy Regulation (Ireland) Act 1871 (so the need for modern legislation can hardly be overstated). It is also intended that the new legislation will pave the way for Ireland to ratify the United Nations Convention on the Rights of Persons with Disabilities (CRPD) which it has signed but could not ratify because the Lunacy Regulation (Ireland) Act was so evidently in breach of Art. 12 of the CRPD. Whether the proposed Bill will actually be CRPD compliant remains open to debate (see one argument that it is not posted on Human Rights in Ireland blog) as indeed is the question of what exactly the CRPD requires in dealing with people with decision-making difficulties because of capacity impairment.

The legislation has been influenced by some Canadian legislative models and some of the ideas from Bach and Kerzner’s thought-provoking paper for the Law Commission of Ontario are also evident. The Bill introduces some important new concepts. Among the most striking are the concept of a decision-assistance and co-decision making. Both of these concepts try to address the requirement in Art. 12 (3) of the CRPD that ‘States Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity.’ Both concepts require the involvement of another person (a ‘decision-making assistant’ or a ‘co-decision-maker’ ) and it is clear that in many cases, the most likely person to fulfill the role will be a carer or family member. The assistant/co-decision-maker may be appointed by the person him or herself or by the court.

Looking at the Bill from a carer’s perspective, a couple of preliminary points emerge. First, the functions of the decision-making assistant/co-decision-maker are extensive (s. 11 for decision-making assistant and s. 21 for co-decision-makers). Carers will be required to take on a legal role which, inevitably some will be more suited to than others. In performing this role, carers will be subject to the supervision of the office of the Public Guardian and may have to make reports and be visited by a ‘special visitor’ (s. 59(1)). The Public Guardian may also receive complaints about the way an assistant/co-decision maker is performing his or her functions and act on these complaints, including making an application to the High Court (although it is not exactly clear from the Bill what the nature of this application will be- presumably it is to remove the person from the role). It is clear though that formal oversight is going to be part of the process and carers are going to be the subject of this. While, clearly, oversight is needed, a careful balance has to be struck between effective and appropriate protection of vulnerable people and ensuring that carers’ already difficult roles are not made unnecessarily more difficult. It would also help to have some kind of support for carers in carrying out their legal role – the potential, for example, to involve an advocate where the legal task to be performed gets too complex or difficult. Unfortunately, as currently presented, there is very little indication of support mechanisms for carers/family members in the Bill.

A second important provision from a carer’s perspective is s.53 which allows for a ‘informal decision-maker’ to make decisions in respect of ‘personal welfare’ (including healthcare and treatment). Again this is most likely to be a carer. As with s.5 of the Mental Capacity Act 2005, an informal decision-maker does not incur legal liability in respect o the decision which s/he would not have incurred if the person had capacity to consent and if s/he had consented to the decision. This however is provided that the informal decision maker acts in accordance with the provisions of the Act – although no better indication than this is given. This is a dense and complex piece of legislation and this kind of imprecision is hardly helpful for carers operating on the ground. The matter may of course be addressed in guidance and/or a Code of Practice – but as presently presented, a great deal more clarity is needed.

This is an important and very welcome Bill – it is trying to achieve a difficult task – made all the more challenging by the context of austerity in which the legislation is going to be introduced. The kinds of advocacy/educative frameworks which need to underpin this kind of legislation are unlikely to be funded in the near future. Bearing this in mind, though, it is still important to engage with the framework presented to ensure that it serves its purpose in the best way achievable and this includes recognising the perspectives of carers.

A most shocking event has taken place in the Indian state of Bihar involving the state run midday school meal programme resulting in the death of 23 children who had consumed insecticide laced rice and curry (http://news.in.msn.com/national/government-to-probe-mid-day-meal-scheme-after-23-children-die), The Midday Meal Scheme is the world’s largest school feeding programme involving 120 million children in India. The programme is run on a public-private partnership with NGOs and local contractors and the scheme involves giving hot nutritious freshly cooked food to children. It is envisaged as a means of reducing malnutrition and increasing school retention of children coming from poor households, particularly in rural areas.

In the present case the food had been cooked on the school premises and preliminary investigations suggest unintentional poisoning. The oil in which the food was cooked had been put in an empty pesticide container and the two substances had got mixed. This oil had then been used for cooking the meal. The food was prepared in the house of one of the teachers whose husband was grocer. So conspiracy theories are also rife.

From a care perspective, this case raises several issue to my mind.Firstly, how can such carelessness take place and what does it tell us about the attitude of those managing the programme? What does this tell us about the contemporary state as it moves from a paradigm of social welfare to neo-liberalism wherein it sub-contracts core care functions to private stakeholders? What is the value being placed on the lives of young children in such a context? How is that the rage which such an event should have generated has turned more into a storm in a teacup? What does this event tell us about the interface between care politics and corruption?